Katie Wright is the mother of 9-year-old Mattias and 11-year-old Christian. Christian has autism. Katie’s parents, Bob and Suzanne Wright, founded Autism Speaks in 2005, and it has since grown into the world’s leading autism science and advocacy organization.
Watching the boys and adults affected with autism tape the Katie episode about autism was so inspiring to me. These are amazing, articulate, gifted and artistic young men. I loved hearing everything they had to say and learning how their parents dedicated their lives to facilitating their child’s success.
Christian cannot be interviewed on talk shows because he cannot speak.
As I was watching the show, however, I couldn’t help but be reminded of the huge disparity that makes up the autism spectrum. My son lives on the other side, the severely affected side of the spectrum. I am so proud of my 11-year-old son Christian – no one works harder (my opinion as his Mom!). However, Christian is not a savant, not a professor, not an artist, but just a typical kid struggling with severe autism. He was toilet-trained at age nine and needs 24-hour-a-day supervision because he has no awareness of danger. More to the point, Christian cannot be interviewed on talk shows because he cannot speak.
When people discover my son is severely affected they often ask if he received early intervention. Yes! So to all those parents who did the same, you are not alone! We spent our entire savings on the best intervention possible. The problem was that his untreated biological issues made cognitive progress impossible for many years. I believe this is because he has “total body” autism, not a behavioral disorder. Additionally, kids like mine have complicated gastrointestinal and immunological problems, which is, unfortunately, fairly common.
This wide spectrum of autism really can become a tricky issue. I want the public to see the many gifts of people with autism and how much they contribute to our world. However, it is families like mine who frequently ask for the public’s help and support. It’s important that the public understand that we need more educational supports and more research money (especially environmental research money!) because high functioning individuals are, sadly, not the norm but the best-case scenario for our kids.
Living with severe autism asks everything you have to give…
It is also essential that families with more severely affected children with autism not feel isolated. Living with severe autism asks everything you have to give: all your money, all your time, all your energy, all your spirit and sometimes even your career and marriage. I want us all to acknowledge the hard work of those parents and kids.